Stage 4 Medullary Thyroid sarcoma

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Hi everyone 

I am new to this forum. My husband has just been diagnosed with stage 4 MTC his mets are so far in bone only. We are waiting on the genetic testing and to see if he has a RET mutation. We are wondering what treatment options there is if you do not have the mutation? We are also wondering if having the mutation changes outcomes or life expectancy? At this stage the oncologist does not think they Will recommend surgery. It sounds to me that several people with stage four still had surgery ? Any information would be helpful.

  • Hi Mutans, I'm sure someone will be along soon with more experience and knowledge of the stage of your husband's cancer, who can answer your questions but i just wanted to say I did read your post and I'm sorry you're going through this. I've got MTC too (with spread to lymph nodes) mine turned out to be sporadic not genetic and I was told my only option was surgery. I know you probably need answers from someone with MTC at your husbands stage, (as mine was still operable) but it's so rare I just wanted to reply. My daughter found great info and comfort from a dedicated MTC group she joined.
    Best wishes x

    Medullary Thyroid cancer dx May 2023

  • Hi k9crazy

    Thank you so much for your reply.

    I hope your surgery went well and that you are recovered. Yes it is such a rare cancer it is hard to find useful information. We are waiting on the genetic testing and hopeful my husband has a RET mutation as it has better treatment options.